Sunday, 2 February 2014

I don't want this post to be taken as negative. I try not to do negative. I just wanted to record what cure and remission mean to me as a long term Crohn's sufferer. I stress that it is based on my experience, medical history and the particular "type" of the disease that I have.

Are there different types of Crohn's? The consensus appears to be that there are 5 types and, to complicate matters, they are not mutually exclusive. There are other factors as well - such as age at onset. (The list is shown at the bottom of the post). Reading the descriptions I reckon you can put me down for 2 out of the 5.

The Cure

This is one subject that is guaranteed to stir strong emotions in the IBD community. Everyone wants a cure - period. As sufferers we don't want this terrible disease inflicted on anyone else and WE want to be better. There is a lot of promising research going on around the World but, as yet, no definitive answer to what causes Crohn's or how it can be cured.

For those patients who claim to have found their own "cure" there is, quite rightly, a lot of scepticism from other sufferers. Often there appears to be a hidden, or not so hidden, agenda - a book to publicise; ground up tree bark to sell; marijuana to legalise etc. Unfortunately some of the popular press in the UK choose to ignore the facts just to get a good headline. I was inspired to write a post about one particular "cure" claim that didn't ring true when you read the details. The link to my post is here - http://t.co/DfdokeZkHl

Let's wind back a bit. How would you answer these questions :

What do the words "a cure for Crohn's" mean to you?

If there are 5 types of Crohn's do we need 5 cures?

If a cure(s) became available today how would it affect your lifestyle now, and in the future?

When I was first diagnosed the internet and the opportunity for in-depth research didn't exist. If you had asked me these questions I would have said "One day there will be a medication that makes Crohn's go away and life return to normal". Simplistic and uninformed but that's pretty much the attitude I have lived with over the years. I haven't tended to give a cure very much thought as there have been so many false hopes raised in the media that I've become numb to the concept. At the beginning of December I had reason to rethink what a cure might mean and how it would affect me now......

Remission

Another question - what's does remission mean to you?

For me, between 1981 and 2007, it meant relief from the usual side effects of the Crohn's. In practical terms - no rushing off to the bathroom; not having to watch what I ate; once yearly visits to see my consultant and no barium meals or enemas. The dates are shown on the chart below which gives an overview of my Crohn's history. The timespans marked as "good" could be described as "being in remission". The inflammation was still present and I would get flare-ups every now and then. These were treated by increasing the steroids for a while but for the most part my life was unaffected.

The bad patch spanning 1998 to 2001 represents the period between being diagnosed with a stricture and starting Azathioprine. I was pretty low during that time - bad pain around the stricture, difficulty in finding a position I could get to sleep in, having to take time off of work - I'm sure other Crohns' sufferers will recognise these problems and have been through far worse themselves. There then followed another 6 or 7 years back into a sort of remission brought on by and maintained with 150mg of Azathioprine each day. That phase ended shortly after stopping the Azathioprine.

Jump forward to 2011 - following surgery I've now entered a different type of remission - clinical remission. The inflammation has completely disappeared. This is not speculation as I have seen it (or rather not seen any sign of it) with my own eyes during the two colonoscopies since surgery. The consultant is hopeful that it will be a few years, at least, before it becomes active again. As such I have stopped taking any Crohn's drugs apart from Loperamide (Imodium) as a regulator.

.... at the
beginning of December my GI consultant made a comment that surprised me. I had asked him about taking Loperamide long term to which he replied that due to the surgery I had
undergone he wouldn't expect my digestive system to ever work properly
again, hence the capsules. It wasn't something I had considered before. I had lost 14cm of small intestine which didn't sound very much when compared to
some of the surgeries I have read about.

[Addendum - June 2014 - I was so intrigued by this statement I repeated it to the consultant at my appointment in June. He said but it wasn't what I was missing that had prompted his remark,
more the effect of a surgeon having been in and rearranged my guts. Thinking about it subsequently, the operation in October 2010 was not
simply to remove a stricture but to sort out internal fistulas and loops
that had formed. The operation took four and a half hours and the
surgeon described it as "one of the most complicated and enjoyable" that
he had carried out. The way he phrased it will always amuse me].

Now I find myself in a position where although I'm in this clinical remission, which I would consider to be a deeper remission than I had previously experienced, but my day-to-day life is still punctuated with the equivalent of "flare-ups" requiring fairly rapid transit to the nearest bathroom and the taking of some additional Loperamide capsules. From a quality of life/Crohn's point of view, day-to-day living is no better or worse than the period between 1981 and 2007.

Then there's "mental remission". Your brain gets patterned into the "Where's the nearest
bathroom? Am I going to be OK when I go out?" mindset. Breaking out of that, even when you are feeling good, is very difficult. I've found it impossible.

The big change, for the worse, is the amount of time I spend in Outpatients for appointments and procedures mainly due to some rather nasty side effects probably as a result of the Crohn's and/or surgery. The last two years have been particularly intense. I'm hoping that it will quieten down for subsequent years.
If a cure came along now I'm guessing that it would make little or no difference to my life in the short term. Long term it would prevent inflammation returning and that would be very welcome.

[Addendum - August 2014 - I continued to complain about having to dash of to the bathroom so my consultant suggested I should undergo a SeHCAT test to see if I was suffering from Bile Acid Malabsorption (BAM), the symptom of which is bad diarrhea. I've now had a SeHCAT test done and have been diagnosed with severe BAM - see the post entitled "BAM and the SeHCAT Test"]

Cure and Remission

I had already decided to write this post when I saw
reference to a piece on HuffPost's "Healthy Living" site, written by
Rebecca Keplan (@RebeccaKaplan), entitled "Cure vs. Remission: Thoughts
From a Crohn's Caregiver". It prompted
me to put finger to keyboard. (Link shown below)

Crohn's affects each of us in a different way. Just look at some of the stories on IBD forums or search #crohns or #IBD hashtags on Twitter to see what some sufferers are going through in realtime. The spectrum ranges from mild disease with little affect on lifestyle to all out attack on the digestive system resulting in multiple bouts of major surgery and a permanently changed way of living.

Likewise the implications of the words "cure" and "remission" to Crohn's sufferers, regardless of their dictionary definitions, will be dependent on just how far through our Crohn's journey we are and how rough a ride it has been.

Ileocolitis: Ileocolitis is the most common type of
Crohn's disease. It affects the small intestine, known as the ileum, and
the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.

Ileitis: This type of Crohn's disease affects the ileum.
Symptoms are the same as those for ileocolitis. In addition, fistulas,
or inflammatory abscesses, may form in the lower right section of the
abdomen.

Gastroduodenal Crohn's disease: This form of Crohn's
disease involves the stomach and duodenum, which is the first part of
the small intestine. People with this type of Crohn's disease suffer
nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.

Jejunoileitis: This form of the disease affects the
jejunum, which is the upper half of the small intestine. It causes areas
of inflammation. Symptoms include cramps after meals, the formation of
fistulas, diarrhea, and abdominal pain that can become intense.

Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.

There can be overlap between these types of Crohn's disease. Some people
have more than one area of the digestive tract that is affected."

There is also the Montreal classification system which take further
factors into account such as age of onset, location and behaviour of the
disease. I'll leave you to look that up if you're interested.